Having a special needs child can be a huge blessing, but it also causes the family, especially the parents, to have to make some very difficult decisions at times.
All parents must make difficult decisions, but when a special needs child is thrown into the mix, decision-making can become even more difficult. Years ago a mom asked me whether or not I thought it was ok for a family to go on vacations, field trips, day trips, etc. without taking the special needs child. Her concern was that her neuro-typical kids would miss out on trips and activities that weren’t appropriate for her disabled child but were for her other children. She didn’t want her other children to miss out on some great activities, and she didn’t want to cause resentment toward her special needs child either.
My family and I have struggled with that very question many times, especially over the last few years as Hannah has gotten older and her likes and dislikes are more pronounced. For several years when Hannah attended a public-school program for autistic children (part time), it was not as much an issue since we could go on short field trips, play dates, etc. while she was at school. Once we brought her home to homeschool, though, it became more difficult.
Hannah loves certain things. She loves contemporary Christian music. She loves reading books, playing on the computer, and playing with PlayDoh. She enjoys going to the beach and to the movies. But there are certain things she does not love! She does not like big crowds or lots of loud noises. She doesn’t like being in buildings in which the sounds echo. She dislikes certain television shows and songs that make her sad. She doesn’t like snow or rain.
The older she gets, the harder it has become to include her in all of the family and homeschool activities because many of them include one or more of her list of “dislikes.” My other children love water parks, being with friends–even if they’re noisy, and eating out. They don’t mind noise and chaos very much if a party is involved! As they’ve gotten older, they aren’t as fond of chaos and noise, but they can handle it if it means they’re getting to do something fun with friends (like Space Tag or a birthday party, for example). Hannah, however, has a terribly hard time handling those situations.
Several years ago my husband and I began to realize that it was getting harder and harder to keep Hannah involved in activities like birthday parties, family vacations, homeschool field trips to certain destinations, and shopping trips. We tried to continue including her as long as we could and as often as we could. Slowly, though, we began to realize that none of us cold enjoy those activities if Hannah wasn’t enjoying them. She was unhappy because she was out of her comfort zone. We were unhappy because she was unhappy.
We finally realized that it was ok to attend certain events without her. We realized that there was no need to feel guilty about not including her in activities that she wouldn’t enjoy or that would upset her. Of course we would include her in everything that she might possibly enjoy, but we wouldn’t take her places that we knew for certain that she wouldn’t like.
It was a difficult decision to make.We would have liked for her to be with us if she would have enjoyed those outings. If the outing was something that would be stressful for her, though, then we decided it would be better for her and the rest of the family to let her sit out that trip or event.
Once we made that decision and chose not to feel guilty about it, we began to enjoy the activities with Hannah even more because they were activities she enjoyed along with us! Then we were also free to enjoy the activities she wouldn’t have liked. We realized that, for us, it was the right thing to do.
Another important thing to consider is that we always leave Hannah with either a very trusted friend who truly loves Hannah and enjoys keeping her for us (even if that person is a “baby sitter”) or with a relative. Then she can spend some time doing things that she really enjoys while spending some time getting some special attention.
Yes, it was a very difficult decision for us to make. Was it the right decision? We feel like it absolutely was. We love Hannah and want her to be with the rest of us any time she possibly can. At the same time, we feel like we are respecting Hannah’s feelings and those of the other children in the family when we allow her to sit out activities that she wouldn’t enjoy or would find upsetting.
Being a parent isn’t easy. Parenting a special needs child can be even more difficult. We feel like we’ve reached a “happy medium,” though. We feel like we’ve figured out what works for us.